New from Russia

Hi everyone! I'm from Russia,currently studying in Japan. There is no such diagnosis as vuvlodynia in Russia and Japan.But I think I have vulvodynia.
This is my story.It has began this year in February.At first I had pain in my anus.I was told that it was haemorrhoid than anal fissure.I used medicine,but it didn't work.
I shaved my genitals as usual and after 2 weeks I had pain in my vulva,it became extremely red,urination was painful.I was diagnosed with cystitis.After a course of antibiotic I felt a bit better,but had burning, soreness,stinging especially in the entrance to the vagina.I believed that it may be an yeast infection. I visited several gyn.But they didn't see any problems, all the test were ok.But my vulva was so red...Urine test also was ok.But I had pain!I started to think that Japanese doctors just ignore foreigners.
It was my good period in April with some strange feeling in vulva, left side of vagina (may be part of leg),a strange feeling in anus.During urination my vulva became extremely red.  I said to proctologist my anus is red and medicine doesn't work.He said everyone has red anus.I had a feeling that my pain in vulva and anus could have connection.
In May I went to a big hospital.My tests were negative again.Than I was told it may be a problem with nerve and was transfered to a pain section. After a first nerve block my pain returned as burning, stinging, irritation, painful urination, pain in anus,in clitoris.I noticed that my left side of vulva is painful than right side.All tests also negative.
My pain depends on a day,or may be a half day.In a very bad day I have pain in vulva, vagina (near urethra)or may be urethra,anus.Have a bit good days,but I noticed that even in good days I have strange feeling (hard to describe)like my nerves are pulled, strained,tightened or something like that.I can't relax.I have a strange sensation which I have never felt before.I feel tired of this sensation.I take a shower 3 times a day.Sometimes I feel a pain like my nerves are pulled, strained,tightened in the lower part
of stomach or burning, also something like burning in the bladder.Sometimes it seems to me I don't feel a signal for urination.When I sit for a long time a I feel that symptoms become worse.I prefer to lie.In bad days my vulva is extremely red.When it flares up my labia minora turns from pink to red.I wonder if someone else has similar symptoms?I have no pain by touching my vulva, but it hurts itself during flare ups.It's like a burning on skin or under skin,extremely hot skin, or when urine touches left side(sensitive) of vulva.Sometimes I feel anus pain during urination. Cold ice doesn't work for me.
Now I'm taking amitriptyline,but it hides or cut down pain a little.Sometimes I feel not burning,but warm feeling.Or It must be pain but it turned to different feeling,but I know it is pain.Pain didn't go away.
I was diagnosed with hernia L5-S1.I wonder if it may be cause of vulvar and anus pain?
Also I have several questions.
Those who made a recovery, cured and pain free, there is no pain at all?No discomfort?Or may be it is pain level 1-2?Do you feel like before vulvodynia?Or may be you have some level of discomfort?
In good days what do you feel?Do you have discomfort?
I wonder if someone has similar symptoms?
Did acupuncture help you?It only helps to reduce pain or return feeling as before vulvodynia?
How can you work with such pain? I can't concentrate.

yes..ive been there done that. Showers three times a day , and varying degrees of sensation, "awareness" or pain down there..the hot,warm feeling..burning,itchy acidy feeling, it feeling swollen and just plain uncomfortable..all the time, every single day..Can barely focus on anything else during the day, for the rest of my life, but my abnormal hoo ha:oops: lol!!

Strange not having a normal vagina, and everyday the sensations are different..

anyway..im doing better now..on Clindamyacin cream again, and also gyne lotrimin..its been about 2 weeks..Im about to come off the Clindesse and do Gyne lotrimin 3 day) for a week.. a couple boxes) I go thru this process every few months. then I feel practically back to normal again. It always takes more than one tube to get me back to normal again of both the antibiotic cream AND the yeast cream..usually 2-to 3 of each.

and I have to beg my doctor for the cream, and I see more than one doctor,and specifically ask and beg for the cream as tests ALWAYS come out negative for yeast and BV.

They always want to brush you off with Vulvodynia but I know its an infection..and Ill prolly have to be on these creams for the rest of my life, as they always make me normal again. Im damn lucky to convince my doctors to give me the creams, they hate giving out antibiotics of any kind, and especially multiple rounds, as they would rather just tell you, you have Vulvodynia, tell you there is no cure, and give you some antidepresants, and topical numbing cream, and send you on your way.

theyd hate to believe you just have a stubborn infection, or maybe your a person prone to infections, or that antibiotic resistance is a problem now.

Ive struggled for years with vaginal problems..and yes, the sensations around your anus are apart of this condition..your inner but cheek anal, vaginal area becomes swollen, itchy and red.for days, weeks, years on end..its a normal part of this condition..

Jessica11 thank you. I'm glad that you found out some kind of treatment that works for you. It's great that you can feel normal again. It's my dream. 
I tryed different creams which didn't work for me. So I have a small collection of it, which I showed a gyn in a big hospital.
When I asked a doctor in pain section for lidocaine,he surprised  "that thing" which is used by dentist? 
In Japan no infection   no antibiotic  small range of treatment.
May be you are right, there is some undiagnosed infection which irritates our nerves. I also have struggled for 5 years with vaginal problems.Then was almost without problems for 5 years.When it suddenly has begun.
I'm so scared and depressed in flare up period. I want my normal feeling back  I can't concentrate on anything, just thinking about "this place" or I want to pee
I think antidepresants are common practice all over the world.
For summer holidays I returned to Russia searching for relief. Now trying acupuncture, but my neurologist doesn't have experience in vulvodynia,just tryes different points which may relate to my problem. I feel stream of energy inside my body may be it's my nerves, but pain is still inside.

Hi Lena - welcome to the forum.

Personally I think the L5-S1 hernia may well be the cause of your vulval and rectal pain. The symptoms you describe sound as though your perineal and pudendal nerve are affected. These nerves emerge from lower spinal cord so might be affected by your hernia - for example it might be pushing on nerves, causing irritation and inflammation with a cascade effect down to the pudendal and perineal nerves. My vulvodynia was caused by a misaligned pelvis which I think caused muscles and nerves to be in the wrong place, probably pulled or under some sort of pressure causing them to become irritated and inflamed, leading to vulvodynia.

I would suggest you go back to a chiropractor and get your back checked again to check that the hernia has not got worse - and also get the chiropractor to check your pelvis in case the hernia has caused you to favour one side and created misalignment. Hernias can resolve themself sometimes but I would get some specialist advice on how to repair it. Once it's repaired (assuming it can be) focus on strengthening your core stomach muscles and your back muscles to avoid getting another one.

A chiropractor was my initial route to recovery. She straightened my misaligned pelvis (I'm now down to visits once every 3 or 4 months for maintenance) and once you get your hernia sorted i STRONGLY recommend Pilates to help you strengthen your back and stomach. I've been doing Pilates (and yoga) regularly and my vulvodynia is now gone  . Its taken me about 18mths to get back to normal so when its a musculoskeletal cause its not a quick cure but i had all the symptoms you describe (except the rectal pain) and i now have no pain or discomfort at all.

Oh and i also did acupuncture in the early days to help me manage the pain - it helped me. But definitely get your back checked out again - that might well be your cause.

Good luck!

Loulou, thank you for your advice!  
My hernia is 5mm. I have always had problems with my back, could ever think that it may affect my genitals one day  I also have misaligned pelvis. It's difficult to find a good chiropractor. I also was adviced to strengthen my back muscles. Definitely I have to find a good specialist who can help me.
Did you train by yourself?It's difficult to understand which exercise fits you,and which doesn't.Or it was special yoga-pilates program for you?
You also had extremely red vulva? And one day it turned back to normal?  Everything improved little by little? Ahhh it's sounds fantastic no discomfort at all  
Sorry for questions.

No need to apologise for the questions Lena, i'm happy to help if i can  

Yes in the early days when my pain was bad my vulva was very red and inflamed as well as having the burning (sometimes stinging) pain. When it was very bad my clitoris and urethra was affected too - red and a constant sensation of needing to pee even when i had nothing to pee (if you see what i mean).

The improvement WAS very gradual, not an overnight miracle unfortunately! But i kept a track of my pain levels in a daily diary so i could see over time that it was getting better. I knew improvement was happening when i started to get varying pain levels (so not constant level throughout the day), then pain levels started to diminish in intensity as well, eventually becoming more about discomfort rather than pain, the good spells became more frequent and eventually even the flare ups became minor and more of an 'awareness'. As my pain and discomfort decreased so did the redness in my vulva. For the last 2 months or so everything has been completely normal.

Regarding my chiropractic treatment, yoga and pilates - none of it was specifically focussed on my vulvodynia. I actually went to see the chiropractor because i'd really hurt my shoulder but she diagnosed my misaligned pelvis so treated me for that as well. I told her about my vulvodynia but she had never treated anyone with it before. So as well as treating my pelvis and shoulder she did a few additional things that she thought might help the vulvodynia (like releasing my pubis symphysis joint and doing flicking type massage of my diaphragm just under my ribcage).

The yoga and pilates i do are just local classes that i joined (and i haven't told the instructors about my vulvodynia). Before i started the classes though i had exercised at home for a few months using a great book by Peter Egoscue called 'The Egoscue Method of Health Through Motion'. This isn't a vulvodynia book, i bought it to help with my pelvis and back. I did the 'Condition 2' exercises (for twisted pelvis) religiously every day for a few months - took about 45 mins each day. These definitely helped and probably got me to a point where i could join the yoga and pilates classes so you might want to check that book out as a first step. I also briefly used some of the exercises in the book 'Heal Pelvic Pain' by Amy Stein but to be honest i managed better with the Egoscue book. You can get both books on Amazon.

So definitely get some chiropractor advice on what would be appropriate for you with your hernia. Perhaps you could try the Egoscue book first (if your chiropractor agrees) to see how you cope (it exercises your whole body but in such a way that it helps to correct specific conditions such as misaligned pelvis) and you can do it in the privacy of your own home (which was a real benefit when I was practically housebound and occasionally had to go knickerless because even my knickers hurt me!)

And i agree its hard to find a good specialist. I think i got lucky with my chiropractor. Could you ask around friends or colleagues to get a recommendation for a good chiropractor in your area? That's usually the best route.

Loulou, thank you for detailed answer.  
I'll check these books.  
It's a proplem to find a good chiropractor in Japan. They aren't the same as in UK or America, or Russia. They have different approach.They can't explain what's wrong.
May be I could find a good one in Russia. But now I have no one to consult about exercises,my bone/muscle problems, what is good for me.  So your advice is important for me.  Of course I'm taking medicine now. After acupuncture and vitamin injection it seems I got additional pain in right side of vagina entrance and right side near the leg  
"Not an overnight miracle" that's why I'm so depressed.  You gave me hope and every story of success gives me a liitle hope.But every time I look at my red vulva and strange bladder symptom, it upset me.
It's a miracle that all your bladder simptoms and discomfort went away by training.

Hi Lena - i'm glad i'm giving you hope! Being depressed is awful (been there, done that, got the t-shirt). The hardest thing with vulvodynia is finding the cause and its so variable and a lot still unknown. At least you have an idea what your cause might be so can work on solutions related to that  

If there's no good chiropractors available, maybe as an alternative you could see a Physical Therapist or an Osteopath if they exist in Japan? - they should both know enough about backs and herniated disks to give you advice on appropriate exercise. Failing that you will need to rely on the books and the internet. Have you tried doing a web search for something like 'safe exercises to do for a L5 S1 hernia' or looked for forums similar to this but for back pain? this should give you some guidance. Videos would be even better cos they can show technique. I'm sure some of the Egoscue exercises will be suitable but i'm not an expert and would hate for you to launch in and make your hernia and vulvodynia pain worse  so see if you can find some reputable stuff on the internet as well to support/confirm the exercises in the books if you can't get to see a specialist. And if you have to go it alone, go VERY careful!! You might have to do trial and error to see which ones you can do without pain.

Also i assume you are trying to get any hernia inflammation down with anti-inflammatory tablets/creams and ice packs? That should help too.

Regarding the accupuncture, my accupuncturist told me that symptoms sometimes temporarily worsen before improving after a treatment so maybe that is what happened for you?

Lenia i've had a look through my books and i have another one by Peter Egoscue called Pain Free - this describes a set of exercises specifically for a herniated disk! So if you haven't bought any books yet this one might be a better choice for you right now (i'm not related to him or on commission by the way!).

Hi Loulou!
I am grateful to you for your help.  Yeh, finding the cause of vulvodynia is the hardest thing.  Your example verified my thought/gave me the idea about bad blood circulation in the pelvic floor.  I'm searching this info too.It makes sense I think. My neurologist said that redness relates to blood circulation.

I'm taking a drug for good blood circulation. Specialist from japanese pain clinic said that it is main treatment for my nerve, antidepressants only to decrease pain.But neurologist said that she had never seen that nerve cured by itself without injections or treatment.Japanese approach differs from Russian.  

I made a 3 day cours of anti-inflammatory injections. Now only painful injection of vitamin and injection of something for bones (helps with hernia).Acupuncture helped with hernia pain (not vulva),also I stopped taking hot tubs  (before I was diagnosed with hernia in August I took it 3 times a day).But my right side of vulva became strange   (hope your accupuncturist is right  ) Now both sides. Unfortunately no one knows how every treatment affects vulvodynia  

Before I've got vulvodynia I have trained in gym for 2 years. That's why my hernia has become worse I think. Also I used an exercise bicycle, so may be It affected my pelvic floor (this part we use every day,but it usually stays untrained and usually don't train).Also this January and February I wasn't so active and have been sitting for a long time. Sedentary life is bad for us   

So since March I have not been active, it's difficult to make any exercise when you have discomfort in important part of you. But I think I have to try simple exercises.Some reputable stuff is good, but he won't control me 24/7/365. Also It is difficult to diagnose which nerve is damaged or check if you have problems with blood circulation and where.
Most important thing I think not to give up, start and continue to do some exercise carefully (hahaha it's easy to say...).

Loulou, your advices may help not only me   I don't think it's Peter Egoscue's advertisement, just starting point  Whether it helps or not I have to take care of my spine too.